Wednesday, 24 December 2014

1. Life's too unpredictable to not make the most of now

With this being my second Christmas affected by ME / CFS, it's clear that I won't be getting my pre-illness life back overnight. In May, I made a concerted effort to stop wishing the time away until I feel better and start making the days count in the meantime.

2. It's okay not to be okay

This year, I've realised that in order to maintain a positive outlook I need a clean slate. Processing and releasing negative feelings as and when they arise gives me exactly that.

3. The internet is wonderful

When you're unable to leave the house a great deal and social situations are exhausting, life can get a little lonely. Interacting online with others in similar circumstances has been a lifeline for me since I fell ill. I feel incredibly lucky for the kindness and support shown towards me through this blog and social media.

4. There's more to me than my chosen career

Resigning from my job brought on a minor identity crisis. Having put so much time and energy into becoming a Speech and Language Therapist, I felt quite lost when it was no longer something I was able to do. In a way though, it has been a blessing in disguise and allowed me to realise more of the other, arguably more important, things that intrinsically make me 'me'.

5. Classics aren't scary

When reading became difficult, I started using the Audiobooks app.In an attempt to make the most of the time on my hands, I've been slowly working my way through classics and have been pleasantly surprised at how many I have enjoyed.

6. Refusing help isn't admirable

Accepting my new limitations has been a real challenge. It's taken me quite a while to realise that struggling on without help doesn't do anyone any good in the long run. People who care want to help. Allowing them to do so is better on both sides.

7. There's a long way to go in terms of accessibility

Now that I'm living in back in a city, I've needed to use my wheelchair when out and about. I've been shocked at times at how poor wheelchair access is to shops and public places. This is something I will be making a point of raising whenever I encounter it in the New Year.

8. Healthier food, healthier mind

Staying positive with chronic illness needs a bit or work. I've found that it's that much easier when I'm giving my body the right fuel.

9. Experiences > money

Being on a tight budget doesn't leave a lot of 'fun' money. Looking back over the year though, by far the nicest moments have been those that haven't cost a thing.

10. Uncertainty is freedom

It's impossible to say what this coming year will bring for me. A while ago this would have terrified me but lately it has felt incredibly liberating. I don't need to be trying to get back to exactly where I was before I fell ill. I can start afresh with brand new goals and ambitions.

Sunday, 7 December 2014

Since the onset of ME/CFS, I've had to let go of a lot of preconceptions about how life in your twenties should be. Where I had imagined myself at the peak of physical fitness, building a career and drinking cocktails at weekends, I'm more often found working on small craft projects in my pyjamas between naps and rest breaks. Getting my head around this deviation from 'the plan' has proved to be a real challenge and accepting the limitations my illness brings hasn't come easily.

Relinquishing my independence, my job and a great deal of my social life to chronic illness has led me through countless cycles of grief. With every 'loss', I've entered into a process of denial, frustration and sadness before finally reaching some level of acceptance. For a long time, these cycles were almost back to back, with very little breathing room in between. Every tiny change from life as I knew it brought on a painful internal battle and new fears about the impact chronic illness was having on my identity.

It's been a huge relief lately though to notice that those grief cycles are gradually getting farther apart and I've been feeling far more at peace with myself, my health and my current situation.

A major sign for me that I must be reaching a new level of acceptance was that my concern on updating my Facebook profile picture recently was not what anyone might think of the fact I'm in a wheelchair but what they might think of my slightly more daring choice of hat. Given that only a few months ago I felt very uncomfortable being photographed in my wheelchair, I think I'm definitely making progress.

I wouldn't say that I have fully accepted my illness, nor am I sure I want to entirely, but I'm certainly far happier for not fighting it at every turn. As much as I don't want it to be forever, ME/CFS is part of my life right now and I'm learning to be okay with that.

Thursday, 27 November 2014

At 17, my boyfriend, Nigel, contracted meningococcal Meningitis. Just a few days later, he passed away.

There are a lot of things etched in my mind from that diffiicult time but by far the most positive and uplifting is a message from Nigel's Dad. He encouraged us, Nigel's friends, to draw life and hope from the tragic event; to go out and live life to the full, and to realise our goals and ambitions in memory of him.

In the years immediately after, I carried this thought with me at all times and had it in the forefront of my mind whenever I came to make a decision. I made a conscious effort to say 'yes' to opportunities that came my way and pushed that bit harder towards all of the things I wanted to do.

More recently, however, I have verged on being apathetic and that voice inside me shouting 'Life's too short!' isn't so loud.

Today, on what would have marked Nigel's 25th birthday, I'd like to renew that little vow I made almost eight years ago and start making more of an effort to embrace life again, to live it to the fullest. My body may not work quite as well as it used to and my goals and ambitions may have to take on slightly different form, but there are still endless opportunities I can say 'yes' to if I look in the right places. The inspirational achievements of those in similar situations to myself serve as a wonderful daily reminder of this. Over the next few months, I'm going to give myself that extra push I've been needing towards some of my new revamped goals and in the process, I hope, pay tribute to Nigel in the best way I know how.

My hope in writing this post is not to evoke pity or sympathy but to remind myself, and I suppose anyone who happens to read it, that life is short and precious and should be made the absolute most of accordingly.

Friday, 21 November 2014

Being full-time poorly with ME / CFS means that money can be a little tight. This Christmas, in an attempt to save some pennies, I'm going to try to make the majority of my gifts by hand. In addition to the pieces I regularly make, I'm also going to try to branch out a little in my crafting. I've been gathering DIY tutorials by the dozen and am already enjoying getting stuck into a couple of new little projects.

If I'm very honest with myself though, I know I've not got enough in the way of energy supplies to make all of the gifts that I'd like to. I've therefore decided, inspired by L H Design's post about 'shopping independent', to try to buy the remainder of my gifts from small businesses and makers. With this in mind, I've spent a fair amount of time browsing Etsy.com and I thought I'd share some of the lovely pieces I've come across in the process.

Wednesday, 12 November 2014

To date, a large proportion of my blog posts have centred around my transition from being a healthy, energetic individual to an individual with the long-term medical condition M.E. / C.F.S. I'm hoping in today's post to offer a slightly different perspective on the changes chronic illness can bring about by enlisting the help of my boyfriend of three years and carer of eighteen months, Jared.

Jared and I are both now twenty four years old. At the time I fell ill, we were twenty two. When it became apparent that I was no longer able to look after myself, Jared never even entertained the idea that anyone else should take on the role of carer. When I suggested that I move back in with my family to save him the additional stress and responsibility, he was having none of it.

Jared's attitude since I've been ill has been incredible and I'm certain that had I not had his encouragement and support, I would be in a far darker place now. I will be forever grateful to him for all his help.

Below are the answers to a few questions I asked him about ME / CFS and life as a carer. If there's anything else you'd like Jared's perspective on, please feel free to leave questions in the comments.

What did you know about M.E. before I fell ill?

Very little. I knew it was related to tiredness but that's about it.

How would you describe it now?

Debilitating. Frustrating. Foggy.

What has caring for me involved?

It varies from major things to minor things. Mainly it's more of a vigilance to potentially difficult situations. In general though, it's things like cooking, cleaning, cutting up food, making and lifting drinks, dressing and undressing, pushing wheelchair, carrying to bed, lifting out of chairs, assisting with walking, planning trips, making phone-calls, reading letters, talking at appointments, setting up rooms, arranging suitable entertainment, assisting out of bath...

How did you feel when you realised you were taking on the role of carer?

I never did really realise. When you live with someone there aren't many sudden changes unless there's an accident or something like that. One day I'm making a cup of tea because you've just got in from work and fancy one. The next day I'm making it because you've just got in and you're a bit tired. The next day I'm making it because you can't get up from the sofa and do it yourself anymore.

How has taking on a caring role at a reasonably young age affected you?

I think it’s probably made me both more and less caring. The reality of always being switched on to the difficulties of someone else, and trying to prevent any problems before they occur, means that you become sort of hyper-sensitive to potential hurdles.

The other side is, sometimes when people complain to me about some minor problem they’re having, a bit of me thinks about watching you struggle to chew food or walk up the stairs, and I find it difficult to take their problems seriously. That’s probably just a coping mechanism though. You can’t give everyone the attention that you give someone you’re caring for, you’d go mad.

When you’re young you feel like you can take whatever comes you’re way, so you don’t really need to prepare for anything. You can go out and not care about how you’re going to get home. That’s probably the thing that’s changed. Now I have to prepare a bit. I have to consider what might happen.

Is there anything you find particularly difficult?

Seeing you in pain, especially during simple things like getting up or eating.

How do you think our current situation has affected our relationship?

It gives us both the moral high-ground. You're in pain all the time, and I'm doing everything round the house, so neither of us can complain about the other one.

What's it like going out with the wheelchair?

To be honest, when we're out in public I've been pleasantly surprised with how considerate people tend to be. It's not a hassle or anything. I still find it kind of fun to push the wheelchair around, especially in places with smooth floors. But then I'm an idiot.

What would you say has been the most helpful thing since I've been ill?

Getting the wheelchair made a big difference. I know it seems kind of drastic at first but if you're struggling to walk it's really the only option unless you give up on going out at all. I also think the online community has helped a lot. In person I've tended to only come across middle-aged people who have any experience of CFS, so finding people who are a similar age and going through similar things definitely helped to get a perspective on things. It seemed to be a big relief for you to discover all these people who you could relate to immediately.

Are there any positives to come out of the situation?

We've responded exactly how I'd always hoped we would respond to something like this. Not that you hope anything like this will happen, but you hope that if it does, you'd respond in a positive way. And I know we have. That and cooking. Having to cook every day means I'm a hundred times better at it now.

Sunday, 26 October 2014

Recently, a friend contacted me with some bad news and it completely caught me off guard.

After I'd established that she was alright and the initial shock had subsided, it struck me that this was the first time in a long while that I'd checked she was okay.

I'm ashamed to admit that since falling ill with ME / CFS (or perhaps, truthfully, a bit before), I've been quite self-involved. In my pre-occupation with my own little life dramas, whether they be work-, relationship-, money-, or health-related, I've been steadily retreating further and further into a Faye-shaped bubble and losing sight of how those dearest to me are getting on.

There have been times when it has been essential for my health and well-being to take a step back but there have also been times when I probably could have done more for those I care about. It's easy to blame my poor communication and inattentiveness on ill health but really that's a bit of a cop out. With limited energy supplies, full-on conversations are exhausting and not always feasible, but a quick 'check-in' here or there isn't out of the question.

In the past, when this realisation has hit me, I've consoled myself with 'I'll be better soon. I'll make up for it then', but almost two years in to life with ME / CFS it's pretty obvious that that day when I suddenly feel 100% isn't coming too quickly. I'm not going to flick a switch and feel better overnight; it's going to be a slow process and take time. All sorts could be going on with those I love in the meanwhile and being ill doesn't cut it as an excuse for not being present at least some of the time.

Beating myself up about what I could or should have done up until now isn't going to do me or anyone else any good, but I can start making an effort to ensure that I don't reach this unpleasant realisation again in the future. From now on I'm going to be stepping outside my 'Faye Bubble' and keeping an eye on the people who have been doing such a brilliant job of keeping an eye on me. The 'check-in's may not be as regular as they would be were I fully-functioning, but it will be better than my recent absence. Over the last week or so I've started prioritising a few more energy beans or 'spoons' (see Christine Miserandino's 'Spoon Theory' ) to connect with friends and family and I feel far better for it already.

Monday, 20 October 2014

It's been far too long since I managed to sit down and write something on this little blog of mine. Life seems to have been getting in the way. Since I was here last, I've upped and left the beautiful Isle of Lewis and am back living in England. It's been a very long and drawn out process with all the organising, packing, travelling, getting the house habitable, unpacking, medical appointments etc, but I think we're nearly there. It's feels lovely to be set up at my computer, cup of tea to hand, with nothing (except a bit of fatigue) in the way of getting back on track.

There have been lots of things I've wanted to write about since I've been MIA but I know I don't have the energy to cover them all in one post. In the interest of pacing (an essential strategy when you suffer from ME / CFS), I thought I'd share some photos, courtesy of my incredibly talented friend, from the loveliest of days before I left the Western Isles.

When our friends asked us what we'd like to do as a 'goodbye' to island life, we jumped at their suggestion to have a barbecue by the beach. It seemed such a fitting way to spend one of our last days in the beautiful place we'd really grown to love. When we arrived, we found the tipi set up, fire lit, table laid and blankets at the ready. It was a lovely evening that I will always remember -I had the best time eating incredible food, in a stunning spot surrounded by people I love.

Thursday, 24 July 2014

Being the language enthusiast that I am, I love the fact that the Western Isles of Scotland is a bilingual community. Here on the Isle of Lewis, English and Gaelic have equal language status and a large proportion of children are taught exclusively in Gaelic. This being the case, I was prepared for a few language difficulties when I moved up from Essex. Little did I know though, that it wouldn't only be Gaelic that I'd have trouble understanding.I naively assumed, as a native English speaker, that the only thing to prevent me from understanding my mother tongue in Scotland would be the unfamiliar accent. It soon became apparent though that there are fair few words and phrases used in Scotland that we don't really come across south of the border. Initially these idiosyncrasies baffled me, but two years down the line I've grown to love the quirks of Scottish English.With the spotlight on Glasgow this week for the Commonwealth Games, I thought there's no better time to share a few of my favourite Scottish-isms.Here they are with (I hope, accurate!) translations:

noun: blether

long-winded talk with no real substance, chat

adjective: bonny

pretty, beautiful, attractive

adjective: boggin

disgusting, unpleasant, vile, ugly

adjective: canny

having or showing shrewdness and good judgement

noun: chancer

trickster, person who pushes their luck

adjective: crabbit

grumpy, bad-tempered

noun: dafty

a silly person

adjective: dreich

dreary, bleak (especially of weather)

adjective: glaikit

not very bright, gormless

verb: gonny

going to

phrase: getting the messages

doing the shopping

phrase: haud yer wheesht!

be quiet!

noun: neb

nose

noun: neep

turnip

adverb: noo

now

adjective: peelie-wally

off colour, pale looking

verb: shoogle

shake about

noun: tattie

potato

Huge thanks go to my bonny pal from Perthshire whose translations have stopped me looking like a dafty on numerous occasions. She's brightened many a dreich day since I've been a wee bit peelie wally and is always there for a good blether. I'm gonny miss her heaps when we move back down south!

Wednesday, 9 July 2014

I'm not normally one to admit it when I'm struggling, but over the last week or so I really have been.

After the highs of having friends to stay and making it out on adventures, the inevitable payback kicked in. Payback, or post-exertional malaise, is a defining feature of ME / CFS. It is a period of intense exhaustion and flu-like symptoms which follows physical, mental or emotional exertion. This time for me payback meant muscle weakness, migraines, nausea and extra fatigue. Although I knew it was coming and had readied myself for the physical side of things, I wasn't prepared for how drastically it would affect my mood. It left me feeling extremely low and very lonely.

Since falling ill I've had to work hard at maintaining a positive outlook and have built up a sort-of mood-boosting and loneliness-alleviating toolkit. I eat reasonably healthily, move about when I can, keep a gratitude journal and give myself small craft-y projects to focus on. Generally, these among other things keep me upbeat despite feeling unwell.

Throughout the most recent bout of payback though, my cheer-up strategies just weren't doing the trick. I was constantly on the brink of tears, noticed negative thoughts creeping in, and felt frustration building by the hour. It all came to a head when, flicking through a Speech Therapy magazine, I saw an advert for a 'dream job'. Knowing that I'm not well enough currently to even consider working in such a role, I burst into tears and began hysterically sobbing. It was completely irrational, but at that moment, in my mind, the job symbolised everything that I'd lost since becoming ill.

Close friends and family know that I refer to my lower moments as 'wobbles'. A brilliant friend of mine always says to me 'Don't wobble by yourself. Call me' but I never normally do. I pick up the phone, but talk myself out of it before dialling. It's a pride thing mostly, I think - wanting to be stronger than that. As well as wanting to be seen as someone who is dealing well with illness and not moaning all the time.

This time though, I did call. I'm not sure what made me do it but I'm so glad I did. Once I'd somehow, between sobs, got out a garbled 'I'm so fed up', my aforementioned brilliant friend proceeded to say a series of all the right things. Having talked my feelings through and cried my little heart out, I came off the phone feeling better than I had for a while. When I tried looking for the positives a little later on, they came that much quicker than before my release of emotion.

Of all the brilliant things said to me during that phone call, the most memorable and comforting was definitely : 'Of course you're upset. It's crap'.

Something I've struggled with time and time again is that, in trying so hard to stay positive and deal with my illness well, I push aside the difficult feelings that come with it. This often means that the negative feelings, having not been processed, build up and come back two-fold.

It's taken a while, but I'm slowly getting my head around the fact that, in order to reach a point where I'm able to truly be positive, those negative feelings, which are very real and demand to be felt, cannot be swept under the rug.

Being okay with not being okay hasn't come easily to me, but I feel like this week someone has flicked a switch and it's clicked. It may not sound like the most positive revelation in the world, but for me it is. In order to be genuinely positive, I need a clean slate. Processing and releasing a lot of negative emotion has given me exactly that.

Thursday, 26 June 2014

Having had a magical (almost) two years living on the Isle of Lewis, Jared and I have decided to move back to mainland UK. We've both absolutely loved it here, but agree that it's the right time to move on. Before we say our goodbyes to this beautiful part of the world, we're determined to make the very most of living in it.

When friends from London came to stay, we seized the opportunity to visit and camp overnight in one of our favourite spots - the bothy (stone outhouse) at Mangersta. Even if my brain weren't clouded by the fog that comes with ME / CFS, I don't think I could find the words to do this place justice.

Aware that the trip would involve more walking than I'd managed in a while, I was a little apprehensive about it. This was far outweighed though by my determination not to allow ME/CFS steal what I knew would be a fantastic experience from me.

Since I'm not able to drive far, my lovely friend, Mr Spraggs, offered to negotiate the hour-long single-track car journey instead. This was really very kind as it meant that I could save my much needed energy beans for the next more physically demanding leg of the journey.

Having parked up and checked with the owners that it was actually ok to stay in the bothy, the boys identified the best route through fields and highland cows for us to take on foot. With a plan in place, we began the 600m walk from the car to the cliff face. It would be a massive lie if I said this part of the trip was enjoyable because truthfully it was really quite tough. As I looked at the expanse I still had to cross and tried 'just ten more steps' I was reminded of how I felt at the ten mile point of a half marathon several years ago. With physical support, regular reminders to keep breathing and a chair carried along behind me for rest breaks, I managed though. It was all worth it the minute I realised I'd made it and looked up to be met with the view pictured below. Hannah, who works as a health professional, was absolutely fantastic throughout this part of the trip and I cannot thank her enough for her quiet but comforting reassurance and encouragement. Her patients should consider themselves very lucky.

The bothy, where we would be staying, was built in memory of a journalist who came from this part of the island. One of the things I love about it most is that, nestled into the cliff face and made from rock, you could miss it entirely if you didn't know it was there.

Inside there is a stove, a bench, a small wooden bed and a window looking out over the Atlantic Ocean. With the fire lit and tea light candles dotted about, it feels incredibly homely and cosy. Having unpacked our bits and pieces, we cooked a very yummy chilli con carne dinner before getting comfy for a round of the Pointless board game.

Settled in the little hideaway, non-alcoholic shandy in hand, I completely forgot about my illness for a while. It was such a treat to be tucked away from the world, in lovely company, doing exactly what I would've had I not been ill. When I curled up in my sleeping bag, listening to the others chatting away and the fire crackling I felt more content than I had in a long long while.

When morning came, it felt incredible to step outside into the fresh sea air and watch the birds swooping down from the cliff. After a leisurely (attempted) pancake breakfast we packed up, and bid the bothy our goodbyes.

The trip back to the car wasn't easy but our lovely evening had given me the boost I needed to get through it. By the time we got there my legs didn't feel like they were attached to my body and I was a little emotional from the effort. Just under a mile of walking across two days may not sound like a lot but for me it was a huge achievement. I could've burst with how proud of myself I felt. There is no way I could've done it without the help of the lovely people pictured below and I'm just so grateful they were there to support me.

I had such a lovely time and it was just the escape I needed. I really hope that this was just one of many adventures Jared and I will fit in before we return to the mainland.

Wednesday, 25 June 2014

Just over two years ago, while still at university, I received an email about a job opportunity on the Isle of Lewis in the Western Isles of Scotland. Intrigued, I opened the attachment and began to read. The job advert started like this:

"Are you interested in working and living in an area of natural beauty with clean air, no traffic jams and the prospect of being able to explore a variety of outdoor leisure pursuits?"

Immediately I thought 'Yes! That sounds lovely!'. With very little consideration of practicalities, going entirely on my gut feeling, I filled out an application and sent it off. I'd heard a million times how difficult it would be to find a job. With this being my first application, I decided not to think too much of it and told myself it would be good application-writing practice at best.

That being the case, it was pretty surreal when not long after, I found myself sitting on a noisy propeller plane heading to what would turn out to be a very unusual interview involving a trip to the beach and a scenic drive. It was even more surreal when a few days later I'd accepted a job in a place I'd never even heard of a few months earlier.

Taken on the day of my interview

Having grown up in Essex with easy access to London, moving to an island with more sheep than cars and just a handful of shops (that I'd never heard of) was a bit of a shock to the system.

Jared, my boyfriend, and I decided to embrace the cultural differences and it wasn't long before we found ourselves on all kinds of weird and wonderful adventures. At weekends, we'd grab a map of the island, close our eyes, point at random and head out in that direction. More often than not, we'd find ourselves on a stunning beach with not another person in sight.

Unfortunately, when I fell ill, these excursions became less manageable and more recently we've not been out and about in our beautiful surroundings as much as we would've liked. A couple of weeks ago, I resigned from my job and we've decided it's time to move on.

Before we go though, we're determined to do as many things as are (sensibly, given my condition) possible and really make the most of living here. It's not going to be easy and will require a little more planning than before I fell ill but I've amassed plenty of helpful strategies which I know I can call upon. Where there's a will, there's a way and there is definitely an awful lot of will.

I've managed one very exciting little adventure already and am looking forward to sharing it along with any others I manage over the coming months here on my blog.

Tuesday, 3 June 2014

Whether or not to resign from my job as a Speech and Language Therapist is one of the hardest decisions I've had to make to date. Last week I bit the bullet, met with my manager and did it.

A bit of background: I trained for four years to be become a Speech and Language Therapist and was very excited to start my first paediatric post in the Western Isles in September 2012. I absolutely loved the job from the off and found it incredibly rewarding. Unfortunately though I had to stop working after a year due to health difficulties.

Speech and Language Therapy is mentally, emotionally and, at times, physically demanding. Acting as a health professional comes with a great deal of responsibility and accountability. My job involved a lot of thinking (clinical reasoning, generating ideas for therapy activities), moving around (driving to schools/ meetings) and intense social interaction (talking to children, parents, health professionals, school staff, voluntary organisations etc). All of which became increasingly difficult as I became more ill.

My work colleagues and manager have been fantastically understanding and at no point have made me feel that I should attempt returning before I'm ready. Despite this however, getting back to work has constantly been in the back of my mind. I've struggled with not feeling 'useful' and have been very conscious of how my absence may have increased the workload of others'. Given that any kind of strain exacerbates ME / CFS, I don't think the (admittedly self-imposed) pressure of returning to work has been aiding my recovery.

After a great deal of consideration (and a long while of denial), I've decided that my priority for now has to be my health. This means that my career will have to take a backseat for a little while. Once I'm fighting fit again, I can throw myself into a challenging job but its just not the most important thing right now.

Although I'm incredibly sad to be leaving the very lovely Speech and Language Therapy Department, I'm extremely grateful for the things it has given me. I've gained brilliant hands-on experience in a field I love. I've learned (the basics of) a new language. I've experienced a very different culture in a beautiful part of the world. I've had the privilege of meeting and working with some amazing kids and their families. And most importantly of all, I've made some incredible, and I hope lifelong, friends.

Now that I've had a bit of time to think and it's sunk in that I won't be going back to work, I feel relieved and, in a way, liberated. There's nothing to say I won't get back to Speech and Language Therapy one day but who knows what exciting opportunity may be more manageable in the meantime?

Thursday, 29 May 2014

Before bed last night I managed to get out in the chair just as the sun was setting. The colours in the sky were incredible. There were oranges and reds and purples and blues and even a bit of green.It's a shame that my amateur photography doesn't really do it justice. It's nights like that that make me feel incredibly lucky to live in such a beautiful part of the world.

Now that the weather is improving I think I'm going to try and get out of an evening more often. The fresh air and a change of scene last night did me the world of good.

Thursday, 15 May 2014

Since being signed off on sick leave there have been a lot of times when I've struggled to know what to do with myself. Pre-illness, I spent the majority of my time out and about and the remainder of my time planning to be out and about. When I stopped being able to leave the house so much, it became very apparent that I wasn't so good at keeping myself occupied at home.For the first few weeks I found myself lying in front of endless episodes of 'Come Dine With Me' just because it happened to be on. There's nothing wrong with the odd 'Come Dine With Me' but it got a bit depressing when it was all my days consisted of. I wasn't at all engaged or content spending my time like that. I was constantly thinking about 'when I'm better'.

When I realised I wasn't going to get my pre-illness life back overnight, I began trying to branch out in my low energy activities. I know I have to spend a large portion of each day resting so I figured it's important that the times when I feel less fatigued are filled as best as can possibly be. The more I've discovered activities within my capabilities that I actually want to spend my time doing, the less I've found myself wishing away the days until I feel better.

Wednesday, 14 May 2014

What is ME / CFS?

ME / CFS is a fluctuating, long-term condition affecting the immune and central nervous systems. It goes by many names.

Most people will have heard of ME even if they do not know a great deal about it. ME stands for Myalgic Encephalomyelitis. Myalgia means muscle pain and encephalomyelitis means inflammation of the brain and spinal cord.The NHS tends to label the condition Chronic Fatigue Syndrome (CFS) but it is sometimes also diagnosed as Post Viral Fatigue Syndrome (PVFS).

What causes ME / CFS?

It is unclear as yet what causes ME / CFS but it is thought that there are likely to be a number of factors involved. There is some evidence that certain infections can trigger the condition but it can also be triggered in other ways.

More research is needed to identify the causes.

Who does ME / CFS affect?

ME / CFS can affect anyone. Estimates vary, but it is thought that there are around 250,000 people in the UK suffering from the condition.

What are the symptoms of ME / CFS?

People suffering from ME / CFS experience a wide range of symptoms and are affected to varying degrees.

Here's an overview of some of the most common symptoms:

Fatigue

Extreme tiredness/exhaustion which does not go away with sleep or rest. A far more intense and drained feeling than ordinary tiredness. Results in weakness of the whole body.

Monday, 5 May 2014

As I've got to know other people affected by ME / CFS, it's become clear that the lack of understanding about our condition is one of our biggest shared frustrations. The illness frequently misunderstood and there are still harmful misconceptions (e.g. it is 'a lazy person illness') floating about which present additional challenges for sufferers on top of managing the symptoms.

This month is International ME Awareness month with ME Awareness Day falling on 12th May.

I thought I'd do my bit to raise awareness through a couple of blog posts.

I'd always intended my blog to be a purely positive space with a focus on sharing specific things that have helped to keep me smiling. I've decided for the next few posts however, in the interest of raising awareness, to adjust my focus slightly to provide a full, honest and undisguised account of what living with the illness is really like (without sounding too moany hopefully!).

How long have you had ME / CFS?

I first started experiencing symptoms 18 months ago. These symptoms became progressively worse until I had to stop working 9 months ago.

Where do you live?

Isle of Lewis, Outer Hebrides, Scotland

Age

24

Things about you that people probably don’t know (non-illness-related):

I enter about 20 competitions a week

I would love to run a marathon.

I was once on Channel 5's Brainteaser. With the answer 'Terry Wogan', I won myself enough money to buy a car.

I am trying to teach myself to sew my own clothes.

Things people probably don’t know about your life with ME / CFS:

I now use a wheelchair as I am only able to walk very short distances without feeling dizzy or my legs shaking.

A coffee with friends will leave me in bed for the next few days feeling as if I have a hangover and the flu combined.

I have had to completely re-evaluate what makes me 'me' since no longer being able to do so many of the things I have always loved and have felt defined me.

What one thing do you think most people wouldn’t know about living with ME / CFS that you’d like them to know?

How I am feeling varies a great deal from day to day. I'm constantly up and down. If I am out and about doing something it does not mean I am 'better', it probably just means that I have been saving up my limited energy supplies especially. I may well be in bed for days after as a result.

What is the most frustrating aspect for you of living with ME / CFS?

Saying "no" because I know its better for my health when my head is screaming out "LIFE'S TOO SHORT, SAY YES!".

Anything else you’d like to say before finishing?

ME / CFS is not just challenging for the person suffering from it. It's tough for the people around them too. I could not function on a day-to-day basis without help. I need physical support getting out of the bath as I'm prone to faint. I need reminders to take my tablets because my memory is so poor. I'm not able to support myself financially as I cannot work. I need assistance to cook myself a meal due to muscle weakness in my arms. If I get out for a meal, I need someone to read me the menu as there is too much going on around me for me to be able to focus on the writing. Sometimes I need help taking my clothes off at the end of the day as my body is too weak. Every once in a while I need a good old cry and someone to talk to. I'm very lucky as I have a patient caring boyfriend who is willing to do these things for me. I know its not always easy for him though and often wish I was more capable of checking he's alright too.

Saturday, 29 March 2014

I have frequently felt very alone since being unwell. Losing a great deal of my independence knocked my confidence. At times, I've felt as if I've lost my identity and as a result have felt disconnected from myself and others. I've not only struggled with this feeling of isolation when actually alone in a room but also when in a room full of my favourite people.

Despite being extremely fortunate in having lots of lovely people who I know I can talk to, it has been very hard at times to shake that isolated feeling. As with most things since being ill, the more time that has passed the better I've learned to deal with the tough bits. I do still feel lonely at times but now know the things that help me to overcome it.

Here is a little list of the things that help me:

Doing something

It doesn't matter what it is. It just helps to be doing. A tiny bit of tidying up, having a wash, working out what I'd like to have for dinner, listening to an audiobook, (fantasy) online shopping, colouring in, filling in my one sentence journal, playing a silly game on my phone, taking my tablets... Anything. As long as it's not just lying down doing nothing. When I feel most alone is often when my confidence is lowest. Doing something makes me feel like I'm being a bit productive and gives me that little boost I need.

Cuddling something

My dog, Teddy, is the best for this.

Making a connection

Often what puts me off contacting someone is that I have very little energy. If I've not spoken to someone in a while, I'm not always up to a proper catch up and so would feel guilty starting a conversation that I probably couldn't manage following through fully. The longer I don't talk to someone, the less connected to them I feel which makes it even more difficult to get in touch.

I've recently decided that very little contact is better than no contact at all and have found just sending someone a quick hello text can make me feel loads better.

If real interaction is a bit challenging, finding someone new/ interesting/ inspiring to follow on social media can make me feel that much more connected to the world.

Getting off Facebook

If I'm feeling a bit lonely, spending time scrolling through Facebook can make me feel so much more so. It's all too easy to think everybody but me is having a wonderful time every second of the day while I am not able to do much. Of course I know in reality that this is not the case and I am genuinely happy to see friends having a good time. It's just hard sometimes not to feel envious when I see pictures of other people out and about doing things I'd love to be able to do but can't.

Telling someone how I'm feeling

It seems silly that just saying 'I'm feeling lonely' out loud can make a difference but it definitely does. Being able to be that open with someone (even if it is my dog) and share whats going on in my head seems to automatically remind me that I'm not actually alone. I know that some people find it useful to write down their feelings. I haven't actually tried this but would definitely consider it in the future.

Doing something nice for someone

Writing a friendly note, buying/making a present or letting someone know I'm thinking of them always seems to help.

Have you experienced that lonely feeling? What helps you when you feel like that?